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Hey Guys 6 years 6 months ago #54436

  • markhudson
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Greetings,

So I know I have not been on in a while and I just wanted to fill people in on why.

First for those who don't know me I have ITP, Autoimmune Neutropenia, lymphocytopenia and Hepatitis as well as previously having Ulcerative Colitis corrected by a Colectomy leaving an Ileostomy

On the 27th of December 2015 I was taken into hospital unable to move much as all my joints aches and where slightly swollen. When I was admitted to the ward they immediately sent me to the High Dependency unit where I became paranoid and my Sats tanked to low 80's. It was decided that i would be placed in a Coma to try and protect me, placing me on a ventilator and feeding me via an NG tube. Drugs which included every anti biotic the Drs could get there hands on as well as fluids and other incidentals where given via a central line.

I was in said coma for two week and came round after a short course of an IL-6 inhibitor that I can't remember the name of. During this time I lost 15kgs (33 lbs roughly) and was unable to move much. Through the next month I was able to get back to eating normalish, Moving about for short distances unassisted and moved to a normal ward after being stepped down to HDU. After about another 2-3 weeks I caught H1N1 in the hospital and it floored me for the next 5 weeks and left me in an isolation room. But I bounced back and after 4 months I was discharged (still not right but I can do most things now except open dam jars) that was a month ago. I used to be on N-Plate every week and have not had it in nearly 16 weeks do we think this is me remitting or is it just my body not recovered yet.

Thanks for any advice, comments or info you might have.

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Hey Guys 6 years 6 months ago #54440

  • Rob16
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Wow, Mark! I can only guess that the IL-6 inhibitor did the trick for you, unless it was all those antibiotics.
The only research I could find on IL-6 inhibitor and ITP said that it was not effective. Was the IL-6 inhibitor tocilizumab (Actemra)? It is undergoing trials for effectiveness against Castleman's disease. Did you ever get that diagnosis? I see you were suspected of having it. It sounds like a case report might be in order!

I did find this one case report:

www.jstage.jst.go.jp/article/internalmedicine/52/13/52_52.9482/_pdf
Successful Treatment of a Patient with Multicentric Castleman’s Disease who Presented with Thrombocytopenia, Ascites, Renal Failure and Myelofibrosis Using Tocilizumab, an Anti-Interleukin-6 Receptor Antibody

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Hey Guys 6 years 6 months ago #54443

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Mark, I'm sorry to hear that! What a nightmare. Why were your joints swollen in the first place?

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Hey Guys 6 years 6 months ago #54460

  • markhudson
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Wow, Mark! I can only guess that the IL-6 inhibitor did the trick for you, unless it was all those antibiotics.
The only research I could find on IL-6 inhibitor and ITP said that it was not effective. Was the IL-6 inhibitor tocilizumab (Actemra)? It is undergoing trials for effectiveness against Castleman's disease. Did you ever get that diagnosis? I see you were suspected of having it. It sounds like a case report might be in order!

I did find this one case report:

www.jstage.jst.go.jp/article/internalmedicine/52/13/52_52.9482/_pdf
Successful Treatment of a Patient with Multicentric Castleman’s Disease who Presented with Thrombocytopenia, Ascites, Renal Failure and Myelofibrosis Using Tocilizumab, an Anti-Interleukin-6 Receptor Antibody


I am going to be honest my memory is spotty atm but I do remember them saying it was not likely to be castlemans but I don't remember why. That is interesting article, I forgot to also say my neutrophil count is normal now for same period. Ok so I found the leaflet it was drug called Anakinra aka Kineret and it is a IL-1 Inhibitor.

Mark, I'm sorry to hear that! What a nightmare. Why were your joints swollen in the first place?


No idea they did arthritic antibody test and they came back negative.

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Hey Guys 6 years 6 months ago #54482

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Hmmm. Odd. I wonder if it was serum sickness? Were you on any new meds at the time? Antibiotics?

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Hey Guys 6 years 6 months ago #54489

  • Rob16
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I am going to be honest my memory is spotty atm but I do remember them saying it was not likely to be castlemans but I don't remember why. That is interesting article, I forgot to also say my neutrophil count is normal now for same period. Ok so I found the leaflet it was drug called Anakinra aka Kineret and it is a IL-1 Inhibitor.

Anakinra is used for arthritis and some other autoimmune conditions, but not ITP. I have done a lengthy search using Google Scholar and can find no incidence where anakinra was studied for use against ITP, or where anakinra was found beneficial for ITP. There is some discussion that IL-1 is partly to blame for ITP, and some indication that IVIg works in part through inhibition of IL-1, so it is entirely reasonable that an IL-1 inhibitor like anakinra could be used to treat ITP. I really think a case report should be written.

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Hey Guys 6 years 6 months ago #54501

  • markhudson
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@Sandi Nope no new meds as far as I remember nothing changed.

@Rob My remission seems to have ended so it was maybe just my body's response to trauma that was keeping the counts high.

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Hey Guys 6 years 6 months ago #54502

  • Rob16
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I am very sorry to hear that the remission is over. Is your joint pain coming back as well?

The fact that your remission was temporary does not rule out any of the possible agents in your 16 week remission. For example, akinra most often is an ongoing treatment.

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